An old, discredited practice: Testing and not telling

New programs to test and tell replace old, unethical practices

Throughout the 1990s, researchers and public health programs tested hundreds of thousands of Africans for HIV every year without telling them the results of their tests. This policy was a public health disaster – allowing HIV epidemics to expand without people being able to see for themselves who was infected. But this has changed as African governments adopted the 90-90-90 program to test and treat everyone. This allows people – not just experts with secrets – to see who is infected, to identify blood-borne as well as sex risks, and therefore better able to protect themselves and others.

The old practice – testing and not telling – was not only a public health disaster, but also an ethical outrage. From the late 1980s through the 1990s, in hundreds of surveys across Africa, researchers asked questions, took and tested blood, kept track of who was infected, but didn’t tell them. In some surveys, researchers even followed and retested the same people year after year to see what happened — without telling people their results. Who had an old infection? Who had a new one? Which spouse infected his or her partner? Which women infected new babies?

This bad old practice has been overwhelmed by new programs to test and tell everyone. So the ethics of testing are much better. But other ethical problems persist: Experts continue blame and blind people with the claim – despite overwhelming evidence to the contrary – that sex accounts for almost all HIV in Africa.

This rest of this page calls attention to prominent projects in Africa that followed HIV-positive adults who didn’t know they were infected to watch them infect unsuspecting spouses.

Testing and not telling: community surveys in Rakai, Uganda, 1989-

Beginning in 1989, a project funded by the US government, with the cooperation of the government of uganda, tested, followed, and then retested thousands of adults in Rakai District, Uganda, without telling them their HIV status.

In 1990-91, the study observed 6 new infections (4 men and 2 women) in 66 serodoscordant couples (couples in which one partner is HIV-positive and the other HIV-negative). During the year, only 11% of men and women in such couples had asked for their HIV status.[1]

During 1994–1998, the project observed 90 incident infections in 415 serodiscordant couples. Only 12% of partners in all such couples reported any condom use in the previous year.[2] Many were not aware of their risk. Among a large sub-sample such couples, “56% of HIV-1-positive partners . . . had requested and received HIV counseling, and 25% stated that they had informed their spouses.”[page 1152 in reference 3]

In 2000, the editor of the New England Journal of Medicine criticized the Rakai trial for not warning spouses at risk, noting that “such a study could not have been performed in the United States”[page 967 in reference 4]. The study team explained, “this was a community-based trial that enrolled all consenting adults, the identification of couples…was done only retrospectively.”[page 922 in reference 2]

Several years later, however, the same study team organized three new studies that were explicitly designed to follow HIV-positive and HIV negative adults during 2003-7 to watch partners infect each other with HIV and other diseases.[5-8] One of these new studies enrolled only men who were willing to hear their HIV test results; the other two studies enrolled men and women – including wives of the one trial that told men their results – without insisting that people tested and followed learn their HIV status and tell their partners.[9]

Testing and not telling: community surveys in Masaka, Uganda, 1989-

Beginning in 1989, a project funded by the government of the United Kingdom, with the participation of the government of Uganda, tested, followed, and re-tested thousands of adults in Masaka District, Uganda. Repeated community surveys found new infections in spouses of persons who had tested HIV-positive in a previous survey. During 1989-1997, for example, surveys found new infections in 22 women and 12 men with HIV-positive partners.[10] Most HIV-positive partners didn’t know they were infected; most partners who were HIV-negative didn’t know they were at risk. As of 1999, the Masaka team reported: “…less than 10% of all adults make use of counselling [to learn their HIV status]… [W]e do not know whether individuals who come for counselling share their test results with their spouse… Although we had only limited data on condom use, it is noteworthy that none of the HIV-negative adults in discordant marriages reported using a condom.”[page 1088 in reference 10]

Testing and not telling: community surveys in Mwanza, Tanzania, 1991-94

During 1991-94, the European Union along with governments of Germany and the UK, worked with the government of Tanzania to survey, follow, and re-survey community residents in Mwanza, Tanzania. Re-testing found six new (incident) infections in men and women with partners who had previously tested HIV-positive. Few if any of the HIV-positive partners had known they were infected; similarly, all or most of the six spouses with new infections hadn’t known they were at risk:[11]

“In most prospective studies, intensive counseling of discordant couples has resulted in the adoption of safer sexual practices, and this has limited their capacity to examine risk factors and transmission rates. In the Mwanza study…cohort members were only informed of their HIV status if they accessed a parallel voluntary counseling and testing service. Only a small number of participants pursued this service.”

Testing and not telling: factory workers and spouses in Mwanza, Tanzania, 1991-96

During 1991-96, government of the Netherlands worked with the government of Tanzania to survey, follow, and re-survey 1,427 men and 745 women — factory workers and their spouses — in Mwanza Tanzania. “[V]oluntary HIV counseling services were available, although less than 10% of study participants made use of these services.”[page 195 in reference 12] Adults followed included 88 sexually active HIV discordant couples (the wife was HIV-positive in 41 couples; the husband was HIV-positive in 37 couples). “In ten discordant couples, the HIV-infected person had used the counseling services at the study clinic [to learn their HIV status], but in only one couple had both partners done so.”[page 197 in reference 12] No discordant couple reported using condoms. Five men and 4 women in discordant couples got HIV. One of these 9 new infections was in a couple in which at least one partner was aware of his or her HIV status.